Sunday, October 20, 2013

He remembers. These boots that drew his attention to me, just one adult in a sea of many the first day we met, he remembers them. I wondered if he would when I zipped them on this morning. I haven't worn them since the early days of his time home and the Indiana weather is finally cooperating and acting the season.

I find it incredibly hard to believe that it was only nine and a half months ago that I was seeing this child for the very first time. It seems he has always been a part of us. There were a lot of us crowding into the foster family's humble home that day - Shawn and I, our translator, the social workers, their driver, plus some curious extended family members of the foster family. All of us were focused on this tiny little boy. All were vying for his attention. Instinctively, I slid to the floor.

It was less than a minute before B came over and started touching my boots. He started patting them and tried to lick them a few times. "Ne! Ne!" He giggled. It wasn't long before he was hiding his toys under my legs and then pulling them apart to find them again. Then he belly laughed. Oh my heart! That boy can laugh! When he laughs, his eyes completely disappear. Cutest thing, ever! --blog post, First Visit, Jan. 30, 2013

At the time, I had no way of knowing how very important shoes were to this boy. He loves shoes. In fact, that was his very first word in ASL. His favorite way to decompress after preschool is to close the door to my closet and rearrange my shoes. Shawn often finds matchbox cars in his boots when he puts them on for work at night. His foster family showed us a picture of his third birthday cake. It was shaped like a shoe. We didn't understand it at the time. We do now.This morning, I sat on the floor and called him over to show him my boots. He reached out and slowly patted them, then, without warning, he lunged for me and wrapped his arms around my neck and held me. For five minutes, my son who is rarely still, sat in my lap and held me close.

Sunday, October 13, 2013

I was reading a book to Eon that paraphrased the Lord's prayer for children. As I was reading, we were discussing the pictures and the text.The drawing portrayed a little girl angrily yanking the stuffed bear from a little boy and ripping its paw in the process. The little boy was crying and the text read, "And forgive us when we do wrong things.""Do you do wrong things, Eon?"Shaking his head, "No. Bo!""Oh, Bo does wrong things. Does anyone else?""Um," signs and says, "Zak!" Pats my arm, signs and says, "And, Ben." Thinks for a minute, "Tali!""So, Bo, Zak, Ben, and Tali do wrong things. Is anyone else naughty at our house?"He looks very thoughtful for a second and then brightens and announces, "KJ!""Eon, what about you? Are you ever naughty?"Chuckles and responds, "Nooooo.""What about Mick? Does she do wrong things?" He looks at me like I've lost my marbles and shakes his head, "No! Mick, BIG!" as he raises both arms high in the air.

He's right. His almost-seventeen-year-old sister is very tall. "How about Daddy?" "No! "Daddy, Big, too!" said incredulously and suspiciously, like he's just now realizing Mommy may not be playing with a full deck. I tried again. "Eon, are you sure you don't do anything wrong...ever?" Emphatically, he leaned in, did not make eye contact, and yelled, "NO! BO bad!" This time I caught a hint of a mischievous little smile.I've been watching Eon do his own version of awareness this month of October. He's been busy dispelling popular myths about Down syndrome. Myth #1: People with Down syndrome are always so sweet!

As a four-year-old boy, Eon's favorite response to any question is, "poop." He uses it liberally and loudly. Myth dispelled. Nicely done, Eon.Myth #2: People with Down syndrome are always so happy!Eon has recruited his little brother, Bo, for this job. They are working to dispel this myth by holding public tantrums, as many and as loudly as possible. Last night, they managed to dispel this myth in their separate classrooms at church. Good work, boys.Myth #3: People with Down syndrome are all so innocent!Clearly, from the story above, Eon is conflicted about this one. So what I think he wants you to know is that people with Down syndrome named Bo are never innocent, and those named Eon are always innocent. Oh, and tall people are never guilty either, apparently. Sorry, buddy. That last one needs some work.

Tuesday, October 1, 2013

I originally wrote this post in March for World Down Syndrome Day, but forgot to publish it. Oops! So, Happy Down Syndrome Awareness Month, instead!The National Down Syndrome Congress has a campaign, "More Alike Than Different," basically showcasing that people with Down syndrome are just like regular folks.

When Eon was a baby, I hung my hopes on that promise. I needed to know that he was very close to "normal." I needed to tell other parents that one day he would do all the things that their kids would. I needed to look to his future with hope.

But, here's the thing: He is different.

I may alienate a whole lot of fellow advocates by saying that, but it's the truth.

He learns differently, expresses himself differently, approaches new situations differently, relates to others differently...he's just different.

Some things are harder for Eon than they are for a typical child. He struggles with fine motor tasks like unbuttoning his shirt or writing letters. He has to work at retaining words and how to speak them.

While Eon is really healthy, some kids with Down syndrome have multiple health issues.

But, here's the other thing: It doesn't matter.

Our love for him is not different.

We truly don't feel differently about him than we do his siblings. We don't feel frustrated by his differences. We're not sorrowful about his challenges. We're not overwhelmed by his needs.

Our expectations for his behavior are not different. Our delight in him is the same. Our pride in him may be slightly excessive, actually.

The campaign is truthful and valid. People with Down syndrome are more alike than different. While Eon does have these differences, he is more like his siblings than he is different from them. In spite of his differences, he's just a regular kid...with some quirks.